Ask Rash: Fibromyalgia/CFS and Exercise

Question: Hi! I was diagnosed over 16 years ago with Chronic Fatigue and Immune Dysfunction Syndrome and fibromyalgia. I have had difficulty exercising sufficiently and regularly for my heart health as well as weight reduction (maintenance). Do you know of others who suffer from this side effect, and what are they able to do that helps with these issues whilst avoiding the inevitable “crash.” Thanks for any suggestions.

Answer:

This question is a tough one as I haven’t had much experience with the disease process of fibromyalgia and chronic fatigue. What I do with my patients is send them to a pain clinic, as well as a fitness trainer who specialises in chronic illnesses. This way they can slowly build up their stamina to enable them to exercise more. This individualised, multidisciplinary approach involves the physician, the fitness specialist, the pain specialist and a dietician (who can e.g. help patients to identify food intolerances, optimise blood sugars and blood pressure). When you begin an exercise regimen, you start off slowly and gradually to build up to your tolerance level. Traditional medicine can also be accompanied by complementary therapy. I have found that the best therapies are reflexology and possibly acupuncture, as well as tai chi, yoga and behaviour counselling.

 

Further reading:

A search for fibromyalgia and exercise yields a wealth of results, including the following:

1.    Fibromyalgia exercise website

2.    Fibro-friendly exercises

3.    Debunking Myths: ‘More Exercise’ for Fibromyalgia & Chronic Fatigue Syndrome
(also includes further links to studies, etc.)

Here is another link recommended by Rash:

4.    Eating for Energy

 

Rash and I (Sarah) would love to hear about your experiences with fibromyalgia/CFS and exercise? Do you have any tips for our readers? How do you make sure you pace yourself whilst preventing post-exertional malaise (that all too familiar crash following physical or mental exertion)?

By Sarah Downing

My name is Sarah. I was born and grew up in England and currently live in Düsseldorf, Germany, with my fiancé Corey and my cuddly cat Biscuit. I work as a translator and writer for my own company Aardwolf Text Services (www.aardwolf.de) and I love vintage clothes and music, as well as singing karaoke.

13 comments

  1. I have lupus, fybro, ra, and all the goodies that go with it.. Some people can do Band excersises.. I have them for my arms, but cant do my back or legs… I use to go swimming twice a week, water arobics.. was great.. was tired when i finished but was a good tired, kept my weight lower.. now i cant get to the pool my weight has gone up no matter what i do.. so if u can swimm or do water arobics thats the best answer i can say.. good for your heart, and easy on the bones!! HUgs good luck

    1. Hey Niki,

      Thanks so much for sharing your experiences. I totally agree with your comments on aqua aerobics. I’ve done it in the past too and remember reading how gentle it is on the joints, which is why it is great for older people and those who are sick. It’s enjoyable and refreshing and gives you a really good workout. I’m so sorry you are no longer able to do this – is it because your condition has worsened? Do you think you will be able to do it again in the future?

      Hope you feel better soon!

      Sarah

  2. I was diagnosed with fibro around the age of 25. I also am extremely sensitive to exercise. My Dr sent me to a six month biofeedback fibro program. That was in Anchorage AK and I don’t know who else has it. The best of what I learned was that we hold our tension in our shoulders and neck and as we hurt we pull up on those shoulders till at times they touch my ears.Additionally we clench our jaw with stress and pain. Both add up to migraines and sharp pain down arms, across shoulders and even down the back. The biofeedback was electrodes hooked up to my shoulders, arms, hands, neck, and jaw to show me when I was tensing and clenching. The person reading the results while I reclined in a chair would instruct me to breath deeply and relax my body, while focusing on two major points. 1. keep the shoulders down, fight the instinct to tense, tighten or raise them, remind yourself of this often. 2. keep your jaw relaxed, slightly open, and especially keep your tong in the bottom of your mouth. All the fancy equipment, and the nice lady to help me adjust to it and remind me when I wasn’t responding correctly, was helpful. However those two tips made the most difference in my daily pain and overall body response.

    The exercise part can be tough,I have heard the response is variable for all. I can do some in moderation but my mother (also had fibro) tolerated nothing well. The other part of the biofeedback was physical therapy. I have gone to at least 5 or 6 different therapists, some helped, some made it worse. the best were the ones who listened to my responses and adjusted accordingly. Starting at 10 to 15 minutes on a slow treadmill was, for me the best. Increasing slowly week by week. What I found useful for me was how I started the day. Before getting out of bed I was taught to do stretches and flexes. toes and fingers, ankles, and wrists are flexed back and forth. take your right arm and reach across to the left side, use the other hand to assist the stretch across your chest, while stretching stretch and wiggle the wrist and fingers. you will feel the gentle pull in the shoulder, and back. repeat on the other side. Lay on back and pull one knee at time up and into your chest, then stretch leg up into air and rotate the ankle and wiggle the toes. While still laying down shift to a side and twist at your hips, push hips forward to the bed and stretch upper torso back wards opposite of the hips. this stretches the mid back and sides. After you get up use the door frame and place one hand on each side of the frame at shoulder hight, hold elbows up parallel to the ground, with feet flat lean forward gently through your arms. that will help release the front muscles that take the brunt of your tension. At times this will hurt a little or feel achy, but it releases the lactic acids that we build in our tissues and helps reduce the pain we often feel in just getting up. The best therapists alway told me listen to my body and go slowly. Before My thyroid reduced my body temperature, I found pool therapy gentle and fun. I hope this helps you as much as it has me.

    1. Wow, Heide! What excellent tips! Thanks for sharing:-). I also do a lot of stretches – some of them the kind that you learn through regularly going to a chiropractor. Aqua aerobics is definitely one of my favourite exercises ever and it’s available with so many different intensities and props that help you step it up to different levels. A good physiotherapist should adapt her exercises to her client. My personal trainer is also a physiotherapist and she gets how hard it can be for me at times – I plan to interview her and her partner in the near future. For me personally osteopathy has been extremely helpful for the constant neck pain I suffer, most probably due to my large bust, but of course hormone imbalances don’t help with joint pain either. My pain has improved since my hormones have become more balanced and I find that going once a month to an osteopath is good for maintenance. He is gentle and also relaxes the muscles before adjusting them, which tends to work better than the “crack-crack technique” of many chiropractors. I know that many osteopaths also do acupuncture, which is one of the things Rash recommended.

      Love,

      Sarah

  3. I’m still trying to find that perfect “exercise”! Aquatics is out– the only facility reasonably close has an unheated outdoor pool… and I have “issues” with cold (and the chlorine gas escaping from the water…). Yoga– nothing close, and problems with joint pain and pain in whatever is touching the floor… mat… mattress…. Have learned a tai-chi routine, however, joint pain (knees and hips) prevent me from doing the whole set at one go. Mostly, I just stretch 3-4 times/day, and do a quarter of the tai-chi routine each time.

    Thyroid medication was probably the biggest help for relieving the fatigue. Acupuncture has helped, although the treatment lasts only a couple of days. Have just started VitD3 supplementation + a natural B-complex (in addition to the other supplements I was taking)– again, it seems to be helping.

    1. Hey Kaytee,

      It’s so tough to find something that works for you! I wonder about pilates as well – have you ever tried it?

      Your tai chi routine sounds like a great option and it really sounds like you’re pacing yourself, which is generally was is advised when you have fibro.

      I’m also on a good supplement. I think optimising your nutrition and making sure you get what you need can do a lot to help you feel better. I know cat’s claw or turmeric are other herbal options that are supposed to work well for joint pain.

      Keep up the good work!

      Love,

      Sarah

      1. I’ve been trying to improve my diet– not buying anything with HFCS, dyes, MSG, any-thing benzoate, soy … and buying organic when possible.
        Tumeric doesn’t seem to do anything for me, either as curry seasoning (including with fresh tumeric root), nor the concentrated versions in capsules. I like the taste, but it doesn’t help the joint/muscle pains. I haven’t tried cat’s claw, though. Herbal sleep aides don’t work, either, nor does melantonin.

        1. Hey Kaytee,

          It’s so frustrating when you try supplements and they just don’t seem to make a difference. Anita Roberts (from our column Sassy Style Talk with AJ) knows a lot about different supplements, including cat’s claw, so feel free to contact her if you like. She’s on Facebook, so I can hook you two up – just let me know.

          It sounds like you are doing a good job with your diet though. I know all those food intolerances can really cause problems with tiredness, as can all those crappy chemicals!

          Love,

          SArah

    2. fyi if you like swimming then may i suggest hydrotherapy with a physical therapist. Best of both worlds. I have sent many patients there with very good results. Ther are physical therapists everywhere.

  4. For anyone who has already read this, I just added a further link (3.) to Further Reading, which I’d highly recommend you read if you are interested in finding out more about this topic.

  5. I have severe generalized osteoarthritis and erosive inflammatory osteoarthritis. I could not function at home, let alone work, if I did not have my pain meds. I totally believe in eathing healthy and exercising when possible. Sometimes that is not enough. I would hope that others who don’t need pains would be thankful for their good fortune and understanding of those of us who do need meds. Best Wishes to all.

    1. I’m sorry to hear about what you are going through, Lisa. I certainly wish that people who are not suffering could be more empathic and understanding to those who are.

      Cheers,

      Sarah

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